This blog is for those who suffer from Alzheimer's Disease,
FTD and forms of dementia, caregivers, friends and medical professionals that want to share their feelings, thoughts, encouragement, vent and open how they cope with this disease. I was diagnosed in 2004 with the early stages, and quite frankly it scared the beegeebees out of me. 2007 PET SCAN confirmed all.
Joe

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Tuesday, May 10, 2011

Yesterday i had blood drawn for tests for my physical next week. Then I spent the rest of the morning with my phsycologist . It was interesting, i have seen mim for nearly 7 years or so with breaks. We were talingi about the so called new advances in Alzheimer's and the new guide lines for diag. and treating. Funny part about it is as we talked he remembered I had said most of this years agao. And it has been posted on this blog in various forms over the years. I dound that all to be interesting that these so called experts only needed to talk to me or someone like me with the disease to get these startling new ideas and would have cost nothing. But what the fuck do we know, we are sick and mindless. But it does add credability to sites like mine, that we know what they cannot figure out.
I had another doctor write me recently, and the gist of what he said as I could understand it and questioning him on what he said is that he basically in simple terms agrees about the profession, and pharma companies, they all have their heads up their collettive asses and only promote drugs for money sake, because no matter how you want to cut it, the drugs DO NOT WORK! It is still about 8 years from diag. to the end drugs or no drugs. Our paper here had an article today about a former mayor, whose wife was diag. 7 years ago and just died. I know we hear about the 15 to 20 year sufferers, but they only exist because someone was smart enough to notice it in its infancy stages. The ten or so years of true EOA which most pros call DDSS, my term for Distraticed, Depressed, Stress, Syndrome.
I have my moments, what is difficult is getting what is in my brain cell, down to my fingers and then getting them to type what it is that is their. I have to do it quickly or if I think to long ( 5-6 seconds) it is gone and never gets said.
I know from some mail i got i insulted the Alz.org, but i want you to know that was intentional. Yes they help caregivers, they have done shit for me and I have contacted them many times. Even my local San Diego Chapter, who I gave copies of my book to for their lending library. And they wanted me to help with things and with the State, YES YES YES i said. Their ultimate answer and reuests have been complete silence, and I have heard this from others, including some Drs. I know their are good people working for them and my attack if you will is not on them, but what seems to be an organizzational lax of understanding the sufferer. Oh yes they know it is not pretty, but it does not seem that they have the first idea of the real terror in our minds and the loneliness and the difficulty we have telling anyone, because we know you do not know or understand this hell, you are not in it.
Time to shut up, i am getting to angry and feel like telling most everyone out there to fuck off, but we are family and I need you and I think you need me also while I can spout off and make some sense.

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We welcome you to our world where Alheimer's is taking its' toll. But we work together, the entire family, we love and share while the time is still there. Somedays are difficult and scary but the road is filled with Love & Kindness and God's help, who could ask for more. Hope you visit us often and you can email: jolynn1@cox.net, with thoughts, comments, questions and we will offer any help we can.

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This blog does not accept any payment for the listing of links to other sites nor do we accept or endorse any products, including those advertised on linked sites. This blog is simply my journey with the disease of Alzheimer's and Frontal Temporal Lobe Dementia. We pay tribute in memory to those that have past from this deadly disease.